💬In plain words
What the trial is, and whether it could suit you
Children and young people (CYP) with life-limiting conditions represent a growing population with complex care needs that span health, education, and social care systems. These children often have multiple diagnoses, rely on medical technologies, and experience prolonged trajectories of illness. Despite this, care remains fragmented, services are poorly integrated, and definitions of "complexity" are variable, inconsistent, and inadequately reflect the lived experience of families and the perspectives of professionals.
The CHESS (Complexity in Health, Education, and Social Support) study aims to develop a shared, evidence-informed understanding of "complexity" in the context of CYP with life-limiting conditions. The study will be delivered by a multi-disciplinary, multisectoral research team and is funded by a National Institute for Health and Care Research (NIHR) Programme Development
Sign in to get the eligibility rules as simple questions to take to your doctor.
📋 Eligibility rules (as published)
Stage 1 - Interviews
Inclusion Criteria:
* Children (5-17 years) with any life-limiting condition defined using the UK Together for Short Lives widely adopted 4 categories of life-limiting/life-threatening conditions among children.
* Parents/carers of children (0-17 years old) with a life-limiting conditions.
* Bereaved parents of a child who had a life-limiting condition (at least 3 months since bereavement).
* Healthcare professionals (medicine, nursing, allied health professionals), social care providers, education teaching and therapy staff with \> 6 months experience of caring for children with life-limiting conditions.
Exclusion Criteria:
* Children unable to communicate via an interview, using 'draw and talk' or play methods, Talking MatsTM, or via their parents.
* Children that speak languages not supported by NHS translation services.
* Any child or young person for whom the PI believes participation in the study may induce undue psychological distress.
* Parents/carers are unable to provide consent/assent to participate in interviews.
* Parents/carers that speak languages not supported by NHS translation services.
* Parents who are recently bereaved (\<3 months).
* Any parent/carer for whom the PI believes participation in the study may induce undue psychological distress (e.g. parents of children who may be receiving end-of-life care).
* Professionals with \<6 months experience of caring for children with life-limiting conditions.
Stage 2 - Workshops
Inclusion criteria:
* Parents or carers of children with a life-limiting condition (0-17 years old).
* Bereaved parents of a child who had a life-limiting condition (at least 3 months since bereavement).
* Researchers working with or in the field of complexity in children with life-limiting conditions.
* Professionals across child health, social care, and education with experience of working with children with life-limiting conditions for \>6 months.
Exclusion criteria:
* Professionals across child health, social care, and education with \<6 months of experience working with children with life-limiting conditions.
* Parents, carers, or professionals that are unable to provide consent or assent.
* Children with life-limiting/life-threatening conditions will not be included in the workshops
* Parents who are recently bereaved (\<3 months) of a child who had a life-limiting condition.
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